Sponsored Articles

Adapting to Life Outside Our Home With SMA

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I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

It Takes a Village Sponsored Post

You may have heard the saying, “It takes a village to raise a child.” Truer words have never been spoken, especially for those of us raising a child with spinal muscular atrophy (SMA)—even after receiving treatment with ZOLGENSMA® (onasemnogene abeparvovec-xioi). Over the past couple of years, our village has included…

SMA Then and Now

Milan and Elena’s journey with spinal muscular atrophy (SMA) Type 1 started 9 years ago with their first daughter, Josephine. “We had no idea what SMA was when the doctors diagnosed her,” explained Elena. “We really felt they had made a mistake.” When Milan and Elena were told there was…

Planes, Trains, & Accessible Travel With SMA

Talk to your doctor to determine if you or your child is fit to travel. Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. The first time Leah flew on an airplane, she was six months old, almost a year before she was diagnosed. We have always been a traveling family and once she was diagnosed, we were both hopeful and determined that it wouldn’t hold us back. I have always flown with Leah by myself, just the two of us. Call me crazy; it’s OK, I am. There are some things we have learned that have made it so much easier for us.

Finding work-life balance

For the first 20 years of my life, I was oblivious to what SMA was. At a young age, I realized that I was different and wondered why my body failed me. I was in college earning an Associate’s degree with plans to go on to obtain my…

Finding your true potential

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Sometimes we tend to limit ourselves in life out of fear. This can be especially true with the spinal muscular atrophy (SMA) community, where we often depend on others for menial tasks throughout the day. There’s a familiar feeling that we face, the feeling of dependency on others…

Growing Our Family After SMA

My husband and I always wanted 3 children. Even before we got married, we would talk about it like it was going to happen simply because we had decided so. We talked about baby names we loved, and if we wanted to have a daughter first or a…

Introducing Myself and my Disability

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First impressions are crucial for everyone in that they can determine how someone views you for a lasting time. Unfortunately, first impressions often involve an individual’s appearance, and for those with SMA, our differences are all the more apparent. After living 18 years with SMA, I have learned…